Rough 2013 Hopefully Better 2014

It blows me away to think of how 2013 really helped me to see how strong I was when I never thought I could possess any strength at all.
At the end of January 2013 I was hospitalized because I was unable to eat anything, I lost a lot of weight and was scary sick. It was horrible because while I was at Sky Lakes the rotovirus broke out and the wing I was in won the flu lottery which in turn made it worse for me in the vomiting and not being able to eat area. So I was life flighted over to Medford in a helicopter ( I don't remember much of it because right after they put me on the gurney they gave me a mix of phenergan and morphine). I was in Asante Rogue Valley for a few weeks because they put in a j-tube since anything that went into my stomach caused me to vomit profusely. So I was put on the Joey Feeding Pump and had to learn how to use that at home. I was only able to tolerate 15 ml (about a teaspoon) an hour. I was just happy to be home.
A couple of months went by while I was still on the j-tube and I ended up having c-diff as well as a injection site infection from my Humira injection. Back to Sky Lakes I went. While there, the vomiting started all over and so the doctors were doing some tests and they tried to push this barium stuff through my j-tube (which is in the jejunum below the stomach) so that I could get a ct done. Well the radiologist pushes it through and then I started vomiting with in a minute of him doing that. So then they send me back up to my room and say we will try again the next day. The next day comes and they try again and the same stinking thing happens. Well my labwork starts coming back funky from the blood draws. My hemoglobin is dropping as well as my white cell count. My labwork is also showing adrenal insufficiency so they start me on solumedrol. I have been on Imuran and Humira combined for 2 years. The Humira I was on since 2011. The Imuran I was on since 2005 (150mg). So while at Sky Lakes I end up becoming neutropenic (no white cells at all), my bone marrow biopsy comes back at 18% granulocytes, I get this horrible boil like blistery rash on my face (mainly chin), I start getting these ridiculously high fevers (104), my blood pressure decides to drop really low, my heart rate decides to speed up (140 resting and scary higher when moving). Sky Lakes doesn't have the resources to care for someone in my condition (they only had 1 positive pressure room). The hospitalists wanted to send me up to OHSU but I did not want to go that far because my support team is here in Klamath. One of the nurses who has taken care of me a lot, comes into my room. She was not my nurse that day, she asked if she could talk to me and I let her. She starts crying and she says, I am not talking to you as a nurse right now, but I am talking to you as a friend. She then says,"Please let them send you to OHSU, I don't want you to die and that is what is going to happen if you stay here like this." My sitter at the time, tells me that you can't put a price tag on your life so please go up there so they can help you. So I let them life flight me up to Portland to OHSU. It turns out a lot of what was causing all of the issues was that the Imuran and the Humira should NOT be used together because Imuran suppresses your immune system (or in my case at that point turned it off) and Humira caused a fungal infection throughout my bloodstream and also caused abscess infections in my kidneys, liver, and spleen. I was in and out of ICU repeatedly while there because when I got the fevers I would black out and would be unconscious for a couple of days at a time. Also when the fevers occurred my vitals would go haywire. So to help my body stop fighting all of these foreign things in my system, I had surgery and they removed my life port and my j-tube.  Eventually after 3 months I was able to go home. I was so thankful because that meant I had beat death. The doctors had said people in my situation die. I don't want to die, I feel like there is so much more for me to do.
So about a month and a half later my stupid hemoglobin drops down to 3 so I have to go in for a blood transfusion. Yeah, at this point I am like, can we do this outpatient because I do NOT want to go into the hospital. My doctor called infusion clinic and they said I could come in. So they are trying to get blood out of me so it can be type and crossed for blood transfusion, they also want to start the line so once the type and cross were done we could start the process. Well, it took a very looooonnnnnnggggg time. No joke, they ended up calling the head nurse of the ER, and he got the iv therapist's ultra sound machine to find my vein (yes the iv therapist who knows me well and has inserted my picc lines was on vacation). Finally get iv started but it was 4pm and the infusion clinic closes at 5pm so they decided to send me to ER to do the transfusion. Thankfully it wasn't busy for once and they put me in a trauma bay and started the transfusion there. For those of you who do not know how this works, this is what happens: they take your vitals (blood pressure, pulse oximeter machine, and temperature) right before starting the transfusion, they do a second set of the same vitals 15 minutes after it has started, then one last time after it is finished (they repeat this for each unit of blood you receive). Since my heart was still tachycardic (fast heartbeat from the infection still in my system) I also had to be put on heart monitor. Well the head ER doc says by the time I am done with my transfusions it will be like 4 in the morning and so he had me admitted to short stay. They admitted me and transferred me there with the plan being I would be discharged at 10am. Ok no worries, yeah right! My vitals did super good until the last set of vitals when I was done with the last unit of blood. Ugh! stupid neutropenic fever decided to rear it's ugly head. Nurse says, it is hospital policy if someone's vitals go wacky then they start iv antibiotics and send you up to ICU. OH MY WHAT?????? Yes I got sent to ICU, well I was in there for a few days, then the day they switched the hospitalists I get stuck with a greenie. She freaks out because my blood sugar dropped to 35, my heart rate was high, and my blood pressure dropped. I had to do that thing where you lay down for a few minutes then they take your blood pressure, then you sit up for a few minutes and they take your blood pressure again, then you stand up for a few minutes and they take your blood pressure. Theoretically, your blood pressure is supposed to stay in the same range, not mine, it decided to drop lower and lower. I think that test is called hydrostatic blood pressure reading? Anyways, the greenie doctor is freaking out and she decides to call up to OHSU because of my complications with the abscess infections. So here I am again being flown up to OHSU. 3 life flights in less than a year! Because I was in ICU at Sky Lakes when they transferred me up to OHSU I was admitted to the ICU there as well. The whole flight there I was not happy, because I absolutely hate having to explain things to doctors I don't know. I tell my PCP everything, he has all my records and knows everything and how to explain it and is responsible for my treatments. When I get into my ICU room, I was so freaking relieved, it was the same doctor who had discharged me a month and a half before. Wahooo, didn't have to explain the Imuran and Humira thing because he already knew. He was like, I don't know why they sent you here, just because you got a fever which is basically a normal thing for you because of the neutropenia. I told him I had tried telling that doctor that but she didn't want to listen. I end up being there for 2 and a half weeks because I kept getting fevers and lost 20 pounds and had a DVT and my adrenal insufficiency was bad. They took me off my prednisone and started me on hydrocortisone (No it is not the cream lol).
I ended up dropping down to 95 pounds, I am currently at 100. It is hard because the goal is for me to gain weight and the obsession with how much I weigh has pushed me into a regression of my anorexia. I am trying to fight this with all I have. I have faith that my Savior is aware of me and loves me and truly does care. I just feel sometimes that I have no worth because I am so sick. I try to focus on the positive. I am thankful that I am alive, I am thankful for the people God has blessed me with in my life, I am thankful for my family. I am thankful for the Atonement of my Savior Jesus Christ, that it enables me to tap into a strength that I did not know that I had. While going through these health issues, I have prayed to my Father in Heaven, and I feel a peace, a reassurance that this is only temporary, that one day I will be back to riding my bike and running. In the meantime I just need to focus on how I can serve other people through random acts of kindness also I need to focus on becoming a better person.
I just have a feeling that this year 2014 will show some good progress in all areas of my life.
Oh I forgot to mention, I am working with a dietician/nutritionist as well as I have been talking to this incredible life coach named Tammi from EDRecovery. They have proven to be rays of sunshine during my dark storm of anorexia. It isn't easy admitting that I struggle with that, but that is for another blog.
I hope that for those of you reading this, that you are blessed with much peace and happiness. That if you're struggling with Crohn's or anorexia you are not alone. Please reach out to someone. For the Crohn's I would be more than happy to be part of your support system as that is something I struggle with and understand all too well. For an eating disorder, I have relapsed right now and so I think it would be best if you talk to someone who isn't relapsed right now like Tammi from EDRecovery.  You can find her at EDrecoverycoach.com she is there to help and listen, and she really does understand.

Thank you once again for reading.

I have been in Georgia for almost 2 months now. I am so thankful that I get the opportunity to see this new gastroenterologist. He is amazing! When I am finished with my antibiotics for this stupid sinus infection and ear infection then I will be able to start my new treatment.

I am also thankful to Jamie and her husband for opening up their home and letting me stay here. I am thankful as well that they arranged everything so that I could be here.

I have met so many wonderful people while I am here. I wish that Oregon wasn't so far away from Georgia.

My laptop battery is about to die so I will get on here later on in the week to post more. Thank you for taking the time to read my blog.

Music is Medicine

I don't know if it is due to being able to play some musical instruments or because of having been a dj but I love music! Music is what helps me to get through difficult times, it helps me to celebrate happy times. Music is like food for the soul. I have two favorite musicians one is Sage Francis, because he is like a poet, he isn't for everyone though as he speaks his mind and sometimes people get offended, but not me, Sage is a master lyrical poet. My other favorite is Eric Dodge. Eric is not only phenomenal country music singer, but he has a huge heart. Eric is getting the word about him and his music through social media. I am hoping and praying that more and more people hear about Eric, so that he can continue to flourish as the remarkable artist that he is. Even though I have never met him in person and have only communicated with him through the internet, I consider him a friend and it isn't just because he will sing my requests, it is because he will email me back and tweet me back and it feels as if we are having a face to face conversation.

Eric is a friend of The Flylady and she has helped to get the word out about him. He really is amazing and if you are a fan of country music, please check him out. It is very difficult for me to pick one of his songs as a favorite because I like them all, but please give Eric's music a chance.

Elder Christenson got a bear!

Elder Matthews getting a deep condition

It has been awhile since I have written. I hope I can get better at this blogging thing. Well I have been sick again :( On March 25, 2011 the surgeon installed a lifeport in me. It is a double leumen 8 french lifeport. It is supposed to help with the chemo and with iv fluids as well as blood draws. It was very scary when I woke up and felt the two incision points. I am glad that it is over now, as I am starting to get used to having something implanted in my chest.

I have lost another 10 pounds. 30 more pounds and I will be down to what I was in college :D 40 more pounds and it will be the weight I was in high school.

I have been busy with working on my book which is about dealing with Crohn's Disease. I want people out there to know that having a chronic disease like crohn's doesn't have to be life ending. That with the right support, you can make it through, and that you are never alone unless you choose to be alone. I am thankful for the very few who have stuck by my side and who have helped me to know that I am not alone. Yes it still breaks my heart that there are some out there who I have done so many things for to show them love and support and they have chosen to cut me out of their life just because there was a difference between me and someone else. It is frustrating because it didn't involve them and they still cut me out. I still love them and would still do anything to help them though.

I know that I am not a perfect person. I wish I were perfect because I don't like to offend anyone. When I do make mistakes and offend people I don't even want to be around myself. I hope that if any of you who are reading this, that if I have offended you in any way that you can find it in your heart to forgive me. I am not perfect, but I try to be a better person every day.

Help

I have been feeling like I am drowning with no life jacket. I know in my head and heart that God is there and is trying to help me. I just wish I felt His presence more.

I feel so alone that it hurts my stomach and I feel like vomiting. I feel like since I can't have any children due to my hysterectomy and I can't afford to adopt, my purpose as a woman is no longer there. My heart aches to be a mother so bad. I see other friends and family members with their children and it hurts that I will never have that opportunity. I feel so worthless.

I don't like feeling this way and I want a way out of feeling like this. I need help and don't know where to turn.

Please someone help me. Help me to know what my purpose is. Help me to know that there is hope for me. I hate feeling so alone.

Through Endurance WE Conquer

Well so many things have happened. I had that horrible, wind-knocked-out of me feeling the last couple of weeks. It started off with getting the news that I have stage 1 colon cancer then 3 days later on the 28th of March, one of my good friends and sister, Roxanne, passed away suddenly. She has an 11 year old and a 17 year old son who are left behind here on earth. They are amazing young men and I know that Heavenly Father is going to help them to get through it and so is their church family and friends.
At first with all of this going on, I had a pity party for myself. Then I found this quote I wrote in the back of my scriptures and it basically is the latin for through endurance, we conquer. How true that is, just like Job in the Old Testament. He was able to get through his trials and tribulations through his faithful endurance. He lost EVERYTHING! Well almost everything that is, except for his faith and trust in God! He was blessed with more because of that endurance. He didn't expect to be blessed like that, but he was and it was because he endured. I can't see what the end result of my endurance will be, but I know the main thing is that I do trust in and have faith in my Heavenly Father. Endurance is my evidence of my trust and faith in Heavenly Father.
I want you my friends and family to know that I love you and am thankful for everyone of you.

2010 What a Beginning!

On Christmas I was released from the hospital with specific instructions to take it easy because my platelet count dropped down to 70,000 and my spleen is enlarged. I was also informed that I have a kidney disease called interstitial nephritis. I have been stuck on bed rest until the new gastroenterologist gets here. It will be so nice to have a gi doctor near by. I have been so sick these last two and a half months. Despite the physical pain from it all, I have had some love and support from my friends and my family. I just pray that the doctors will be able to help me get through this awful pain.
While I was in the hospital, Roxanne and Becky McGuire decorated my room Christmas style. That helped to brighten my spirits.
My cat Whisper though hasn't been eating and the vet says he has liver failure. He has yellow stuff in his ears and his throat which is an indicator that his body is basically feeding off of itself. He will be 15 in March. The thing is that I have had him for 11 years come April and through my illness and difficult times and during the happy times, he has been there for me no matter what. He is the closest thing I have had to having a child. My heart is just breaking so bad because I don't want to put him to sleep, yet when I pray about it I keep getting the feeling that if I keep him alive it is a selfish thing to do because liver failure is a horrible and painful death. I love my cat and wish there was a way to heal him.
I am having to wear my glasses lately because the other day I woke up and my right eye was bright red and hurt really bad and my eyelid was swollen up. It is weird wearing glasses again after having worn my contacts for so long. I sure hope my eye heals up soon so that I can start wearing my contacts again.
Last week we moved my brother, Jonathan, into his own studio apartment. It fits his budget very well and it gives him some privacy as well as he will be able to get around in town to get things accomplished such as working on obtaining his GED. I hope that he stays on the straight and narrow path. I am proud of him for taking this first step. We got him a DVD player as well as the TV that used to be in my room that way he can at least watch some DVDs to help keep him entertained. I hope that he keeps making progress.
While I was in the hospital my first shipment of Nutrisystem food came. I unfortunately have not been able to keep food down so I have not been able to start my NutriSystem program. My goal for this year is to start the NutriSystem program and start working out at the gym. I am working on my health goals this year and that includes my spiritual health.
I pray that all of my friends and family find themselves extremely blessed this year and always.